It’s expected to reach 100 degrees (38 Celsius) here in the DC region. The hot summer days reminds me of a favorite story. When I was in college, on summer break, my young nieces would spend a lot of time at my parents house, visiting with their Nana and Papap.
One evening, one of my nieces comes charging through the front screen door: “Nana, that crazy guy with the bells…. HE SELLS ICE CREAM!!!”
The Bean and I went to my hometown this weekend — back to the place that spawned my being. I have no immediate family there, just cousins, second cousins and friends.
We took the prerequisite tour – my dad’s grave, the old neighborhood, house, schools, haunts and anything else to bore the hell out of The Bean. “Bean, is this, at all, interesting.” “No.” (A man of few truthful words.)
As a bonus, I was able to see my mom, three of four sisters, some of my nieces, one of my cousin’s family and two other cousins. (More on the last two cousins, later.)
While visiting my cousin’s family, The Bean got to meet one of the youngest members of the family – The Lil’ Guy. The Lil’ Guy is two and was immediately in awe of The Bean, following him everywhere. The Bean like to pace, and when he went into his pace, The Lil’ Guy followed suite. Then, The Lil’ Guy set up a pile of pillows and announced, “This is The Lion’s den.” and pointed to The Bean.
Being a parent of a teen with Aspergers, you accept the fact your kid isn’t going to intentionally interact with most people, let alone with a two year-old. The Bean was great; He instantly went into “lion mode.” It was fascinating to watch the two interact with each other – The Bean following The Lil’ Guy’s lead.
Today, we visited two more cousins. One had a horrible accident with an ATV a few weeks back and was recently moved to a step-down unit. I prepped The Bean before we arrived. “It’s going to be a tough visit, The Cuz is going to be hooked up to lots of tubes and monitors and he’s not going to look or sound the same as before.”
The Bean handled it like a champ – probably a lot better than his dad. He was a perfect visitor. While he wasn’t talking with The Cuz, he let spend time with The Cuz and his brother – catching up and just talking about life.
During the four-hour drive home, I had a lot of time to think. I’m a connect the dots kind of guy, so I have to, at least, try and make some kind of connective statement regarding the weekend. All I can come up with is there’s a lot of love in family – and The Bean, The Lil’ Guy and The Cuz all have fight in front of them. But, they also have a family, a large family, who loves them dearly.
Keep fighting Cuz!
I’m a Steeler fan and as such, I’m bummed. My son, The Bean, over the years became a HUGE Steeler fan. Tonight was very tough for him. As he sat through the game, each Packer touchdown and each Steeler turnover brought him closer and closer to a 7.9 Richter scale meltdown.
Losing is a big problem for The Bean. His high school football team won its first eight games, before dropping three ugly turds at the end of the season. Those last three games weren’t close – they weren’t even on the same planet. And through them, The Bean exhibited meltdowns of horrific proportions. These were “I hope the referee doesn’t throw a penalty on The Bean” types of instances, where The Bean was certainly “using his words” but not very wisely. (“Where did he learn to talk like that? Oh, never mind…”)
Before the Super Bowl started, The Bean was as ready and was as high as a kite. His Steeler cap was on, the Terrible Towel in hand, and he was planning his victory celebration. Throughout the day, as I was trying to prepare him for a loss, he continually assured me he had everything under control.
As the first quarter ended, the Pack was up 14 – 0 and The Bean was in a complete nose-dive. We talked him into a chair where he sat and rooted for a comeback. More Steeler tragedy ensued and the spiral, momentarily on pause, was underway again.
This happened throughout the game – up and down. The game came down to the last two minutes, where the Steelers had to put a 90-yard drive together, or go home as runners up. At this moment, I got The Beans attention and told him “This is your Super Bowl – right here, right now. Not what happens on the TV screen, but what happens in your chair.” The Steelers’ drive didn’t hold and they lost the game.
The Bean… he held. He took the challenge and he pulled himself together. “The Packers played a great game.” For those in the room, it wasn’t fun listening to the drama throughout the night, but at the end, he held it together.
We made progress tonight. Tomorrow, who knows. Tonight, however, while the Steelers lost, The Bean got a win.
One of my favorite memories of the past football season as to do with a young man on the team – “Good.” I call him this because, when we stood next to each other, good things happened on the field. I met him in the spring at a football camp and instantly liked him. He had an air of innocence, with a scraggly beard. Good has Asperger’s. (No one told me as much, but there was no need.)
Fast forward to a Friday night in early September. The team was warming up on the field with Good sitting on the bench. I sat next to him, offered gum and tried to start some chitchat. I was curious as to why he wasn’t in uniform for the game. “I missed practice this week.” He was bummed, so we spoke about his role on the sideline. I told him, “You gotta be in the game. You gotta be there for your buddies. You gotta have their back, pump them up. You’re part of the team, you gotta be in the game.”
As the team took the field, Good had tears running down his cheeks. I stuck next to him. “Gotta get in the game. Gotta stay in the game, cheer your buddies on.”
As the half wore on and as half-time approached, I asked Good if he was going to the locker room. “No.” “No, why not? You’re part of this team. It’s your job to support your buddies. C’mon, you come in with me.”
So we went. He went into the locker room with the team, I stayed outside the doors, out of the way. 15 minutes later, the team marches out the door for the second half. Good is dressed in his uniform. Cool, the coaches let him get dressed for the second half. Really cool of them.
The second half started and the teams struggle back and forth. I see Good sitting on the bench. “Good, you gotta support your buddies, you gotta get into the game.” Good stands, put on his helmet, but has this look in his eyes like “Are you sure?”
It hits me. I ask “Good, which coach told you to put your pads on.” Good replies “You did!”
Duh! Hello! Literal! – “Get in the game!” I meant “Stand on the sidelines. Cheer. Support your buddies.” He heard “Get in the game.” I should’ve known better.
I explained to Good, I was the assistant water boy, not a coach. I also assured him I’d explain to his coaches what happened and he wouldn’t get in trouble, because at this point, he was really worried.
Don’t worry, it all worked out – and I relearned a lesson. I gotta get in and stay in the game.
It’s been a long time since The Bean and I’ve been out to dinner together – just him and me. Football is over (yeah, I have some stories to tell) and Friday nights are for the time being, so tonight, it was burgers at Joe’s.
Mind you, together, we’re not much for conversation. I ask questions, he grunts. He’s rapt in his world of his iPod or a Android, so I’m left to ponder the week and watch the game on the TV screen. But, it’s a wonderful feeling, him and me – and the burgers.
It’s been one of those nights. If you’re a parent, you know what I’m talking about. If you’re a parent of a child with special needs, you really know. As much as I try to sleep and as much as i try to think of other things, it seeps from my unconscious region to my consciousness. “Will he be ready for the world without me?” “Is there more I can do?” “Have I been fooling myself into thinking everything will be OK?”
On these nights, I peel back the layers of work, appointments, commitments, socializing and all of my joking around and I find myself staring at a hostile, unforgiving world. The rose-colored glasses are off and the snakes have moved in, circling, waiting to engulf. I employ positive thinking. I meditate. I read. I write. They’re still here, slithering.
As stated previously, The Bean is a manager on his high school football team. His duties include keeping the players adequately hydrated, being a general gopher (go-fer this, go-fer that) and laundry.
But laundry duties come with the “dad” package. Laundry. How in the world did I get into a situation where I spend three to four hours a week cleaning 75 grass-stained, sweat-soaked, stink-to-high-heaven football uniforms? Well, the head coach asked and I readily answered “Yes.” After every game and through the next morning, The Bean and I collect, sort, treat, and wash some of the most sweaty, stinky and generally nasty clothes imaginable. We’ve gotten pretty darn good at it, too.
La Pistolita, my significant other, had a hard time wrapping her head around the fact I was spending my precious Saturday laundering football uniforms. My family and friends thought the same. “You have no time as it is, how are you going to spend three hours laundering football uniforms?” That is a fair point, but regardless, time is made for two reasons.
The Bean is learning how to work and how to do tasks upon which others rely. It is a great teaching tool – teamwork, efficiency and taking pride on one’s work. Most importantly, it gives The Bean a sense of accomplishment. It’s pretty cool seeing those jerseys and pants neatly folded and stacked, morphed from a pile of stink.
Secondly, it gives the coaches a few extra hours each week. These guys devote a lot of time to the school and the football team. If they’re not coaching, they’re grading papers, (they’re teachers too), fixing equipment, working on the field, studying film or taking graduate courses. They need a break. They deserve a break.
The way I see this situation, it is a win/win/win for all. The Bean is learning to take responsibility and pride in his work. The coaches have a little extra time and I get to watch it all happen. As for La Pistolita, she’s come around. My family still thinks I’m crazy.
Football season is in full swing, which takes The Bean to the sideline. He is a manager for his high school team and he cherishes his position. He loves the camaraderie and daggummit, he just loves football.
As much as he loves it, when he’s on the sideline at a game and he’s left alone, he’ll become absorbed with whatever it is he gets absorbed. Unfortunately, it isn’t the football play happening 40 yards from where he’s standing.
During the first few scrimmages (where different teams practice against each other) I thought I’d leave Das Beano to himself. I would be impressed to witness how much he matured over the past year and to observe how he magically transformed into an independent 15 year-old with no hint of Asperger’s, ADHD or OCD.
Instead, I watched him wander aimlessly around the sideline, bite his hand, yawn and plop himself on the bench. Earlier in the year, I had the opportunity to ask Dr. Temple Grandin how I should handle this very situation. Her advice was to instruct him afterward and discuss things he did right and things to be improved. Going on to the sideline, near him and instructing on the spot would only embarrass him.
However, in the past couple of weeks, watching from the stands, my instincts told me otherwise. (Yeah – I know, there have been a time or two when my instincts were really wrong.) As much as I admire and respect Dr. G. and think her western-wear rocks, I, for the time being, have made a conscious decision to, respectfully, not follow her advice.
There is a time to teach and I time to stand by. Right now, class is in session. Someone once said, and I’m paraphrasing, being the parent of a special needs child means you have to let go of your embarrassment and inhibitions, step in and do what has to be done. Be there. Be engaged. This isn’t a job for coaches or trainers – they’re busy attending to the game. Yet, each game presents wonderful learning opportunities.
I, for the life of me, will not let these golden and fleeting opportunities pass by The Bean. His job requires him to tend to tasks and interact with players. He needs to constantly water the players, keep his bottles full and listen for the long whistle signaling a timeout. With guidance, he does these, all at the same time. With immediate direction, he becomes (important concept for TheBean) engaged. Without, he falls to a zoned-out state.
Along with keeping him engaged, he needs to be shown how to be engaged. Walking up to a player who just ran off the field and asking “Hey, would you like some water?” really doesn’t cut it on the sideline. “Hold a bottle in the air and quickly shout ‘water!’ If they want it, they’ll take it.” Of course after the game, we discuss the difference between a sideline environment and the classroom. I can see it now, The Bean walking in Algebra, holding his assignment in the air and shouting “Homework!”
For the record, The Bean does not want me on the sideline. He’d rather have me roped and tied to a kitchen chair while he goes off to a game. I know there is a fine line between what he wants and what he needs and I’m trying not to stomp all over it. Right now, I’m hoping a steady dose of direction with something he loves when he’s 15 will pay off when he’s 16, 18, 35 and 65. I just hope I’m right.
My turn has arrived. I’m on furcation, which is what we in the news industry call a combination of furlough and vacation. The down side is no paycheck for one week. (Furlough.) The up side is I am expressly forbidden from all work-related communication for a solid week. (Vacation.)
When I scheduled my furlough, I intended to use the time for productive and useful activities like going through all of the paperwork that has collected, cleaning out the closets, taking long runs, rebuilding the kitchen, cleaning the Gulf, making world peace – you get the idea. Instead, the universe in which I live found out I had a free week and filled in those empty time slots. I’m not complaining because they are useful tasks – doctor’s appointments, study sessions for finals and football camp for TheBean.
I’m not complaining about the lack of me time, just commenting on it. I’m thankful I have the time to ride roughshod over TheBean as he studies for finals and work with him through football camp. He’s not happy about it, but tuff nuggies for him.
Football camp brings the ever-ending question as to how much I should butt in when he’s performing his team managerial duties. Coaches don’t have time to keep him on task so I attend to provide direction. I’m always surprised at how much effort is required to keep 70 young men sufficiently hydrated. Therefore, it’s an important job and I think TheBean is starting to realize its importance.
And today brings the annual physical, which I’ve put off for the past two. I anticipate a fair amount of grief from my MD – she’s gonna yell at me and I deserve it. I’ve been putting off this appointment for a while; every time I thought to schedule it, a convenient excuse was in hand – no time, too much work. Furcation provided a contiguous slice of time and further delay was no longer acceptable.
Tomorrow – from 7:30 AM to 2:30 PM – it’s me time. What to do? Next week, well that’s a different story. It’s not like the work went away – it’s waiting for me, all stacked neatly in an in-box.
It’s been mighty gloomy lately and I’m not talking about the weather. My disposition has been especially poor. Too much work, not enough exercise, not enough sleep, and too much work. (Did I mention work?)
So, when I have a bad disposition, I’m probably not the easiest person with whom to live. The Bean describes me as cranky. He’s being nice. He ought to say “Asshat” because I’ve been all over his ass. When you get to that point when every little thing drives you over the edge – that’s where I was.
A parent of a special needs kid requires patience and I had none. After one particular sleepless night, getting ready for an early morning orthodontist’s appointment was especially rough. Waking The Bean on a normal school morning is tough enough. 45 minutes early was almost impossible. “Bean, get up.” “Bean, get ready.” “Bean, let’s go.” “Bean, let’s go.” “BEAN!!! LET’S GO!!!”
On the way to the appointment, a radio station reports the weather. “Mostly cloudy, a chance of thunderstorms.” We ride on. Suddenly, out of nowhere The Bean announces “Mostly cloudy, a chance of ‘BEAN, LET’S GO!!’”